I've been following and searching the site for some time before joining. I appreciate the information and updated responses. I am 59 years old, I was diagnosed stage IV with extensive bone mets in spine, pelvis, skull, ribs, shoulders. 18 weeks chemo with good results reducing PSA down to under 1.0 and much of the cancer reduced or gone except the spine area. One hundred day checkup after chemo, PSA up to 6.71, no new growth of cancer but regrowth of remaining spots on spine. Started Zytiga one week ago. I really don't know what to expect, seems like Zytiga is a Hail Mary pass as it works on some, not on others, and no one really takes it for extended years from what I can read in previous posts. Hoping for a long journey, fearing it won't be.
One week on Zytiga after remaining bo... - Advanced Prostate...
One week on Zytiga after remaining bone mets in spine show re growth after chemo.
It's not a Hail Mary pass - it's the standard of care. Zytiga should work quite well at first - there are very few men in whom it doesn't work (those with a rare androgen receptor mutation). I know some men who have been on it for 2 years or more.
Talk to a radiation oncologist about zapping those spinal mets with some SBRT (one or two doses). It may help prevent spinal compression later. Xofigo would be an alternative, but they may want to wait a bit after the docetaxel, as they both suppress bone marrow.
There are many clinical trials you may be eligible for.
Thanks, I will bring that up to the radiation oncologist. In the beginning, I opted not to have radiation because it was so widespread and was going to delay everything else. I know Xgeva is in my future, is that smilar to the Xofigo? I appreciate your advice.
SBRT can prevent fractures on supporting bones, spinal compression, and very quickly relieves pain. You should be taking Xgeva or Zometa already to maintain bone density that is lost while taking hormonal therapies. (In fact, it's probably a good idea to take one along with Celebrex.) Xgeva is completely different from Xofigo (I don't know why so many different PC medications begin with X and Z - it is confusing). Xofigo is a brand name for radium 223 chloride. It is attracted to sites of active bone overgrowth that occurs in PC bone metastases and emits alpha radiation to shrink and kill the bone mets.
Thank you, Xgeva is on my list, just waiting for some dentist release date? And Gregg57 also responded with the Xofigo as an option so I plan to bring that up in my next visit with my MO. Thank you again.
As I said, Xofigo does suppress bone marrow, so doing it right on top of chemo might not be advisable - it depends on what your blood work showed post-chemo. Another drug worth discussing is an immunotherapy called Provenge. It probably works better if used sooner rather than later.
Another suggestion is the new Color Genomics test. You'd probably have to pay out of pocket, but it is only $250. It tests for certain inherited DNA-repair mutations that might mean other classes of drugs may be more beneficial for you. The mutations are relatively rare, but for only $250, I think it is worthwhile. If you should test positive, there is a new clinical trial at MD Anderson that you would be eligible for. Here's some info about all this:
pcnrv.blogspot.com/2018/02/...
I should also mention that Xofigo and Zytiga should not be taken at the same time.
When were you diagnosed and are you doing primary ADT such as Lupron? Also include when you started that and when you started chemo. That information will be helpful.
Thanks for the reply. I was diagnosed April 2017, had docetaxel May 1st for 18 weeks, six treatments. Two Lupron injections before an orchiectomy done in October. Being treated at UT/Southwestern Dallas and was told pretty much from the beginning Zytiga was in my near future combined with Lupron once we got past the red tape with the insurance which required an aggressive rise in PSA. Chose orchiectomy to eliminate potential side effects combining the two. Hoping the Zytiga gets things under control.
Not sure if you aware, there is another "second line" ADT drug available called Xtandi (enzalutamide) It doesn't require the use of Prednisone as Zytiga does. It's another option to consider and discuss with your MO.
Xofigo and Xgeva are two completely different treatments. Xgeva is a bone strenthening medication whereas Xofigo is Radium 223, a radioactive isotope of radium with a farily short half life. Radium 223 goes to the bones where it emits a short range alpha particle. It's the only treatment of it's type that has been shown to add overall survival.
This is just my opinion since I'm not a doctor. Your time to castrate resistance looks like it is shorter than what is typical. I would have genetic testing done to see what gene mutations may be there. Some are "actionable" genetic mutations with targeted treatments and that might help you tailor your treatment plan more depending on what is found. There are a few genetic testing options, one that is popular is called Guardant360. Others here know more about these than I do. I will probably do one when I become CRPC.
Thank you for your suggestions, I will bring those up to my MO. I am getting a second opinion at MD Anderson, Houston early March in hopes of some additional advice or possibly a clinical trial. That will be followed up in early April to see if the Zytiga has had any impact. My MO said there is a lot after Zytiga... he rattled off so many words, I don't even try to comprehend most of what comes out of his mouth when he starts talking all those words I have trouble pronouncing. Thanks Again!!!
TenscTexan
I am one of those that Tall Allen talked bout, taking Zytiga now for 39th month..and my PSA has dropped and stayed undetectable so far. Todd1963 is another ,on Zytiga 52 months now undetectable. I believe there is someone else on this site on Zytiga for 5 years!
I have been on Xtandi for nearly 2 years and PSA has started rising the last 4 months . Not by much . But still concerned with the rise . Thinking about switching to Zytiga which my doctor at the VA suggested .
My hopes are the Zytiga works, those are some numbers I can live with. I guess my problem is my PSA has never really stabilized and even after the rise from 1.0 to 6.71 in 3 months, then it drops down to 5.18 in 12 days,so now on Zitiaga for a week maybe I'm below 1.0 again, Ha, I'm funny! No, even during chemo, my PSA bounced around under 2.0 taking the Lupron along side, my MO was concerned, so the boys went away, which isn't working either. Looking forward to having similar results as you. Thanks
I have been kept on Chemo for over a year. Bone Mets and PSA still under control. Expect to have 19th infusion next week depending on the tests I take Friday. I wonder if you could resume the Chemo? Good luck with the Zytiga!!
My hat is off to you if you can handle that. I will say, the chemo worked, I wonder, If I did it again, would it it do away with most of the remaining bone mets in my lower spine, at least then, I'd kind of feel like I was starting over if that makes sense, but as I stand now, I have abou 50% less cancer than when I started I'd say so I've got some room to catch up.
Im being treated at rena tarbot in mckinney. MO is letting me do as much chemo as i can handle. Im on round 10 and psa undetectable. Like you, in my 55s and diagnosed 6 months ago at stage 4 with extensive spine mets. Chemo is working and i will stay on for as long as i can or until spine mets are gone. Im afraid of that post chemo psa climb. Unlike you though, im on lupron, not orchiectomy.
Hmm, well the climb then went down 12 days later by 20% which the MO had no explanation. What growth there was was on two previous spinal spots the chemo didn't entirely clear up the first time and had gotten larger. There was no other "new" growth anywhere else and no signs of it in any organs or lymph nodes. The chemo worked, no question, if chemo would eradicate or at least reduce the remaining cancer to an absolute minimum, I would certainly be willing to go through it again for those type results. Will your spine mets all be gone?
Hi, my husband is ne the the very few that Zytiga did not work after chemo. PSA went down after chemo but quickly went back up and we found out he had three LNs, of the three he was operated on and the surgeon removed the largest of the three.
Still nervously waiting for the biopsy report. The waiting is the worse.
They had said after chemo that the Zytiga should work bit Zytiga nor Xtandi did not work for him before chemo and doc not work for hm this time???? We are hopeful that after the biopsy that my husband will qualify for Keytruda, which is for lung cancer but was found that it also works for
Prostrate cancer.
Hang in there, there are so many new treatments today, my husband started at age 65 and now is 74 young. Many bumps in the road, but all is well so far.
Keep the faith. Lynn Pa.
Yes, the waiting is the worst. Sometimes it is two weeks from the time scans and blood work are ordered before you get back in to see the MO and see the actual results. 9 years is a long time, I hope your biopsy comes back clean, keep us posted. Thank you.
You will have many years also.....we were already told by the surgeon that the LN he removed was not normal??? We are just waiting to see if my husband qualifies for Ketruda. If not hopefully another clinicial trail?? Fingers crossed!
You keep us posted too and best wishes to everyone that is n this journey.
I also see my MO in person every week. I love rena tarbot.
Hi
I’ve been on Zytiga/Prednisone plus Zoladex for over 6 years, it’s kept my PSA at immeasurable for all that time, started at over 570!
It’s worked incredibly well for me, no liver problems and no bone pain anymore.
Good luck!
I'd like to have some results like that, incredible. So, I'm not sure what everyone refers to as undetectable or immeasurable... what value is that considered? Is it less than 0.25?
Hi Tommy, you took those 3 since the beginning? Bone Mets? Gleason? Sounds like the UK has it figured out!
Hi
PSA 571, Gleason 7, seven major bone mets - skull, shoulder, two ribs, pelvis, both femurs. Pelvis the largest followed by femurs which caused my initial visit to the doctors, who I had to persuade to give me a PSA test, along with a rheumatoid arthritis test, which is what I thought it was.
I'd asked two years earlier and was told "you don't need one of those" as I had no urinary issues.
So, Casodex for one month, I was then asked if I'd join the randomised Stampede Trial and was lucky to get Abiraterone etc. There are around 1900 of us in the UK on this trial, and we've all done remarkably well. My PSA dropped to <0.2 within 8 weeks, and immeasurable (<0.1 in the UK) withing 12 weeks where it's stayed for the last six and a half years.
Apart from really bad muscle wastage, and consequently disability, I'm fine. No dietary changes, special diets or supplements, I don't want to add anything in that might antagonise my drug regime, as I'm on this trial. I feel it's important that they have a good baseline to measure from.
I'm enjoying life at 68, my DW and I enjoy a night out for a drink twice a week. (I met my Oncologist in the pub one night. I told him I was drinking alcohol as a testosterone suppresant. He said, "Oh Yes? You'd need about twelve pints". I replied, "Give me a chance, I've only been in fifteen minutes")
Thank yoy tommy. So you just take zytiga and prednisone? No other adt? My dad had a late diagnosis also. Treatment will be decided today and I'm going to plead the case for zytiga but I'm confused what adt is taken with it or if it's just zytiga.
Sorry, I missed out Zoladex every three months, the main ADT.
Kind of take that for granted, as it's the main testosterone suppressant. Lupron is the same. Abiraterone cuts off the small amount of testosterone from the adrenal glands, that's why a steroid is required. Although its a small amount, Zytiga (Abiraterone) closes down that pathway, slowing the cells ability to mutate and become CRPC, I'm given to understand. Its certainly been effective in the Stampede trial. I've got a great graphic of the Stampede trial arm G, unfortunately I don't think I can post pictures here.
In the UK it’s less than 0.1.
How are you doing now TenSCTexan?
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